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NGO Advocates for Rights of People With Mental Disabilities

by Fatimah A. Mateen

Mental Disability Rights International (MDRI), a nongovernmental organization (NGO) based at
American University, is working to bring international attention to the human rights concerns of
people with mentally disabilities.

MDRI is a joint project of the law school's Center for Human Rights and Humanitarian Law and
the Bazelon Center for Mental Health Law, an organization that advocates for the civil rights of
people with mental disabilities in the United States. This joint effort allows MDRI to utilize "the
experience of top human rights and mental disability rights attorneys in the United States," says
its director, Eric Rosenthal. Rosenthal, a 1992 graduate of the Georgetown University Law
Center, received a fellowship from the Echoing Green Foundation to establish MDRI.

When human rights organizations investigated psychiatric abuses in the past, they focused largely
on the institutionalization of political dissidents but MDRI advocates for the rights of all people
subject to commitment in a psychiatric institution, says Rosenthal. He explained that this
approach to international advocacy was pioneered by WCL professor Herman Schwartz in his
work for Human Rights Watch on the rights of prisoners.

Rosenthal hopes that international focus on the problems facing people with mental disabilities
will ultimately result in the United Nations appointing a permanent special rapporteur to monitor
treatment of people with mental disabilities and drafting a mental disability rights treaty.

Rosenthal is encouraged that for the first time, the U.S. Congress has required the State
Department to include the human rights conditions of people around the world with disabilities
in its annual country reports. "There is a pressing need for attention to [these] concerns from the
human rights community," says Rosenthal. "People with mental disabilities are subject to the
most severe forms of cruel, degrading, or inhuman treatment prohibited by human rights
treaties."

MDRI's agenda is to document and publicize human rights violations against people with mental
disabilities and to create pressure to reform local mental health care systems. It will assist
domestic human rights and disability rights organizations in their efforts to improve the condition
of people with mental disabilities. MDRI will also assist mental health care providers and
governments with technical support to reform their mental health care systems.

In November 1993, MDRI initiated its first project, of documenting the conditions of mental
institutions in Uruguay, on behalf of the Instituto de Estudios Legales y Sociales de Uruguay
(IELSUR). In addition to Rosenthal, the MDRI team included Leonard S. Rubenstein, director of
the Bazelon-Center for Mental Health Law, Clarence Sundram, director of the New York
Commission on Quality of Care, and Dr. Humberto Martinez, director of the South Bronx
Community Mental Health Council.

The team spent two weeks touring numerous public and private psychiatric institutions
throughout Uruguay. Rosenthal says that they discovered that a large portion of psychiatric
hospital residents are referred to as "social patients" - persons placed in psychiatric institutions
because they are poor, elderly, or mentally retarded, or simply have no place to go. He explains
that in Uruguay there is no right to independent judicial review of psychiatric commitment.
Neither is there a complaint mechanism to give people in psychiatric institutions a chance to be
heard when their rights are violated.

Mental health care providers in Uruguay explained that they institutionalize people as social
patients because there are almost no community alternatives. Nonetheless, many service
providers indicate their interest in reforming the mental health care system.

"We found a widespread concern about human rights violations of people with mental disabilities
in Uruguay," says Rosenthal. "In that respect, the work in Uruguay was very encouraging. There
is a real sense on the part of service providers that they would like to bring the system into
conformity with international standards."

Protection from harm is one of the most important human rights principles that MDRI will seek
to enforce. Under the UN Principles for the Protection of Persons with Mental Illness and for the
Improvement of Mental Health Care, every patient shall be protected from acts causing mental
distress or physical discomfort, including injury from unjustified medication, and abuse by other
patients, staff or others. The MDRI team documented some cases of the inappropriate use of
antipsychotic drugs and electric shock treatment on patients for which there could be no medical
justification, including people with mental retardation. These medications, which act as
powerful sedatives, were prescribed at such high doses that many patents were confined to their
beds for much of the day.

While visiting facilities, the MDRI team was able to speak with some patients, many of whom
were elderly and had been in institutions for most of their lives. One woman had been in the
hospital for 20 years "waiting for her sister to pick her up." Another woman, born in the
institution, had no other home. Rosenthal indicates that one of "the complaints we most
frequently heard was that the patients had no privacy - there is no place they can go to be alone."
In some wards, 30 patients eat, sleep, and spend almost every waking moment together in one
large room.

The MDRI team plans to release a report summarizing their findings at a conference in
Montevideo this spring or summer. The conference will be used to bring attention to human
rights abuses in Uruguay's mental health system. If possible, MDRI will introduce experts to
assist IELSUR and other mental disability advocates to work with the government of Uruguay to
bring about needed reforms.

In addition, MDRI's report will include a set of recommendations and proposals for the
development of community-based service programs. MDRI's next projects will be in Hungary
and Ukraine.